[melsh]

#1059658

Hi Everyone,

I was diagnosed with graves disease at age 15, treatment with medication did not work (allergic or immune), had surgery then my levels went back up (my doc said it was like it was growing back) so I drank the RAI.

My eyes have been bothering me and I thought I just needed new glasses but after 3 exams they are saying the double & blurry vision along with one eye bulging it could be graves disease even though they tell me that would be very rare for someone with my previous treatment. There only other thought would be a tumor in the orbit region.

I am looking for a good Endocrinologist in the San Diego area (north county preferably but I will go wherever the best is).

I have only had my TSH checked recently which was sightly low.

Thanks so much for any input you may have!

[Bobbi]

#1176585

Graves disease — both the thyroid version and the eye version — are caused by antibodies. None of the treatments control the antibodies. So it is indeed possible to develop the eye disease long, long after we’ve had our thyroid problems treated. You need to see an opthamologist, not an endocrinologist, if you suspect the eye disease.

Shirley, who contributes here frequently, developed serious eye disease decades after her thyroid issues were controlled by surgery.

[melsh]

#1176586

Thanks so much for your reply!

aves (they both said it could be graves or a tumor with no other options). My PCP said perhaps a Neuro-Ophthalmologist. I would say the double vision is my chief complaint.

Honestly this is very confusing to me as I have been going along well with a few dose changes now & then.

I did loose just over 100 pounds (on purpose) and my weight is stable with a good blood pressure and pulse is usually 55-60 so the graves suggestion doesn’t fit so well.

[snelsen]

#1176587

Hi melch, as mentioned, I developed TED (Thyroid eye disease) over four decades after I had Graves at the age of 22-23. From my experience, I suggest you see a neuro ophthalmologist. I know there are a few in San Diego.
When you call, tell them your brief history, mentioning Graves’ long ago,
*double vision, eyes look different with one protruding, and the blurry. Be sure to mention the double vision. If you have to wait, try to have some doc order an orbital CT so you can go there with that already done, just a suggestion. This pretty much confirms that there is swelling of the eye muscles, (called fibrosis) and usually there is some increased orbital fat (some is normal)

I am reluctant to bother you with a lot of information at this time, until you are sure you have TED. Double vision is VERY DIFFICULT to experience,a nd interferes with work and driving and life. If your eyes are sensitive to light, or feel dry, sunglasses and eye drops and lubricant will be your friends. If you want to PM me you are welcome to do so, I’ll send my phone number so you can call.

I had the EXACT same experience at the beginning. Went to eye docs several times, thought it was my glasses, got two new RX, paid for new glasses, no change.

THese docs are very busy, frequently with a practice of lots of M.S. people too.
I had a great experience, and the neuro/op doc made referrals as appropriate.
Shirley

[Bobbi]

#1176588

You can help to minimize the double vision problems by using an eye patch. The doubling is caused (in the case of TED) by the eye muscles no longer being able to move properly, which causes each eye to “look” at a slightly different spot. The brain does a terrific job, normally, of combining the two focal spots into a single “vision” but when our eye muscles get stiff from TED, they no longer give the brain much to work with. Anyway, with a patch, we give the brain one, single image. It is important to alternate the eye being patched, so that you don’t weaken one. It is also important to note that you lose depth perception when you have one eye patched. So do NOT drive with a patch on one eye, unless you have practiced a lot off road, and know that you can make the appropriate adjustments to the lack of depth. (Note: I scraped off the side of my car, trying to enter my garage, while practicing with an eye patch. No harm to anyone else, thank goodness, but it taught me that I really would be a hazard on an actual road.)

[melsh]

#1176589

Thank you for your help!

After 7 months & numerous doctors (neuro, endo, neuro opth x2, opth x4 , Dr Kikkawa & Granet) TED is confirmed along with my non lazy eye refusing to work independently so patching will not help. The lazy eye is causing the double vision. Several of the docs use the term “very unique”, yeah (not)!

I haven’t driven since last year. I am in a waiting game as it is still getting worse (I see Dr Kikkawa & Granet together next month (thyroid eye clinic). Once it stabilizes Dr Kikkawa will do his surgeries then Dr Granet will do his). My TSH is still low, I am still hoping to find a good Endocrinologist (not happy with the one I saw as his office was too busy and they never return calls or results). I have Aetna PPO (until 12/31 when Aetna is dropping all individual plans in California).

If anyone could recommend a good endo in San Diego I sure would appreciate it.

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